Crab Walk To The Horizon – Menstrual Health At The Coast

Kadzo, sits at the beach watching the waves rise and crush at her feet. The crabs walk to the distant left, and a part of her wishes that she could follow them to the ends of the horizon. A few weeks ago, she had a death scare. Or at least she thought it was, initially. She woke up to a mattress filled with blood, and upon further investigation, she realized that it was her blood. Her heart raced, as she wondered what was happening. Why it looked like she was bleeding to death in her bed.

Her mother, a fisherwoman, came from fishing and called Kadzo to wash the fish as she always did, but Kadzo would not move. Gravity and the flow of blood fastened her to her bed. After numerous threats, and exasperation from repeating herself while standing in the hot sun, Kadzo’s mother ventured into the house to find out what had gotten into her daughter and made her disobedient overnight.

She found Kadzo crying silently and staring at the blood on the sheets. She let out a little shriek, as this was not how she had expected her day to go when she rose before sunrise. Her baby, Kadzo, was now a woman. She was at a loss of words and didn’t know where to start, as she’d never broached the topic of ‘hedhi’ as she called it with her daughter.

Kadzo’s eyes locked with her mums, and she saw a sadness that was palpable, an image of her mama’s heart breaking. Kadzo’s mum got on her knees and embraced her daughter. Tears flowed down her cheeks as she looked for the words to explain what had just happened.

*

Menstruation is nothing to celebrate in the village. It is seen as a flaw in nature, as a result periods are only discussed on a need to know basis. Facts and myths are weaved together in the pep talk. Once a girl reaches her menarche, everything changes, and she is viewed as a woman, old enough to be married and bear children. For the girls, it is beginning of the end of their dreams.

Communal beliefs about menstruation dictate how girls and women view themselves and are viewed by others when they are menstruating. The common narrative is that a woman is unclean and therefore unable to go on with life as usual.

65% of girls and women in Kenya do not have access to menstrual hygiene products, this means that they are forced to improvise and use materials such as newspaper, old rags, and mattresses. Some girls and women are forced to have transactional sex so that they can buy sanitary towels. Psychologically, their self-esteem and confidence are affected. Even though they have hygiene products, they may be scared of soiling themselves. Economically, they may lose income if they are unable to go to work due to pain, cultural taboos or lack of products.

Factual information is sparse, this is because there is no comprehensive menstrual health education offered to girls and women. Menstrual health education helps girls and women to understand their bodies, know more about the disposable and safe reusable products, know the warning signs to look out for and learn period hacks.

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Safari Yangu Na Endometriosis

Jina langu ni Esther Mbugua – Kimemia. Mimi ni mwandishi na mwanzilishi wa Yellow Endo Flower na The Yellow Flower Initiative. Mashirika haya mawili huelimisha na kuwawezesha wanawake, wasichana na wazazi wao juu ya afya ya hedhi.

Kuligunduliwa kwamba nilikuwa na uugua ugonjwa wa Endometriosis nikiwa na miaka 19,hii ni baada ya kuteseka miaka sita kila nilipokuwa katika  vipindi vya kutokwa na hedhi.  Kila ilipofika wakati wa hedhi nilishikwa na maumivu yasiyoelezwa, hakuna daktari aliyeweza kueleza ni nini haswa kilichokuwa cha fanya niwe na maumivu makali. Hadi sasa nimeenda hospitalini kwa upasuaji mara  tatu. Mara  ya kwanza  ilikuwa kuchunguza kibofu cha mkojo wangu, ili wabaini kwa nini nilikuwa nikipata UTI mara kwa mara. Upasuaji wa pili uilikuwa laparoscopy, hapa ndipo waligundua endometriosis ilikuwa imeunganisha tumbo langu kubwa na ovari ya kushoto. Baada ya hapo nilipewa madawa kali ambayo yalinipa dalili za menopause. Upasuaji wa tatu ulikuwa kuondoa viambatisho na kuondoa kipengee changu pia.

Endometriosis ilinipigia ndoto zangu, kuna siku nyingi ambazo nilikuwa nimechoka sana,hata singeweza kuondoka kutoka kitanda changu. Endometriosis ilifurisha tumbo yangu na hewa au gasi nyingi  hadi nguo zangu zengine zilikuwa zinanikaaba sehemu ya tumbo. Maumivu makali pia ilimaanisha singeweza kufanya kazi yeyote. Nilikuwa ninajilaza juu ya sakafu ya tiles ili baridi ya tiles ipunguze maumivu.

Kila nilipokuwa katika vipindi vya hedhi nilikuwa na maumivu makali!  Maumivu ya mgongo, gasi au hewa mingi kwa tumbo, uchovu, kutokwa na damu nyingi nzito wakati wa hedhi, kuvimbiwa na tumbo au constipation kwa kingereaza, maumivu ya kichwa na kuhara.Maumivu  huwa yaweza kupata mwanamke ata kama hayuko katika kipindi chake cha hedhi. Kwa mfano, nilianza na kusikia maumivu tu wakati wa vipindi vyangu vya hedhi, kisha maumivu yakaanza kuja ata nikuwa na ovulate na pia siku chache kabla ya vipindi vya hedhi kuanza.

Nilisikia hadithi za ugomvi kabla ya kujua ukweli, la kwanza ilikuwa kwamba mwanamke akimpata mimba itaponya endometriosis. Kwa kweli kila wakati nilpokwenda kwa hospitali, niliulizwa kwa nini sikuwa na ujauzito. La pili ni kwamba mwanamke aliye na endometriosis aidha ako na mapepo ama amelaaniwa.

Nilikuwa nikibeba madawa mbalimbali za maumivu katika kibeti changu. Wakati maumivu yangekuwa makali sana, basi hapo ilibidii niende hospitali kupewa sindano ya kupunguza maumivu.

Mara ya kwanza,Madaktari walidhani kwamba nilikuwa na hali ya kibofu . Pale kibofu ilipopatikana kwamba haina shida ndipo madaktari waliendelea na matabibu yao hadi kupatikana kwa endometriosis.

Hakuna tiba inayojulikana ya Endometriosis. Upasuaji wa excision ndiyo kiwango cha dhahabu katika kutibu ugonjwa wa endometriosis . Kuna madawa mbalimbali ya homoni yaliyotolewa ili kusaidia kupunguza dalili za endometriosis na kupunguza maumivu. Madawa haya huchukuliwa kulingana na maelezo ya daktari, utumiaji ya haya madawa  hutofautiana kutoka kila siku au  kwa kila wiki au kila mwezi ikiwa sindano.

Wosia wangu kwa wanawake wanao ishi na ugonjwa wa endometriosis ni kuwa mtetezi wako mwenyewe. Anza kusikiliza mwili wako na kuelewa maamuzi na mifumo yake. Usiogope kutafuta maoni ya pili, na soma sana juu ya Endometriosis. Jiunge na kikundi cha msaada. Shirika la Yellow Endo Flower huwa na mkutano wa kundi la msaada mara moja kwa miezi miwili huku Mombasa. Shirika la Endometriosis Foundation of Kenya na Endo Sisters East Africa Foundation pia hutoa msaada kwa wanawake wanaoishi Nairobi na sehemu za bara.

Navigating your Menstrual Health Journey in The Workplace

Have you ever begged a toilet to fill up quickly so that you could flush it, and walk out before people start to question your potty-time?

I have, and it sucks. I have often found myself begging, pleading with the toilet to zap everything in one sweep. A faulty toilet can make a woman on the rag cry in a public bathroom.

A few years ago, I worked in a place that women had to carry their used sanitary products home. There was no provision for sanitary waste management. I wasn’t the only female employee, but I quickly realized that is the way things were and there was little that we could do to change it. With men at the helm, our needs were overlooked, and we didn’t stand up for ourselves. I chose to visit a nearby mall every time I needed to use the bathroom.

Menstruation is still a taboo topic in many places. With conditions that are far from ideal, it is no wonder that some women struggle to feel on top of their game during that time of the month. From sanitary products being inaccessible for some, to the lack of clean toilets and waste management, to the societal normalization of pain, it makes a simple bodily function seem like a life sentence.

Over the weekend, I hosted a support group meeting where we discussed menstrual health and the workplace. It was a refreshing, informative and interesting conversation. Some of the things we covered are lazy toilets, sanitary waste management services, normalization of pain, sick-offs, embarrassing moments, performance during your cycle, PMS, dismissal, disclosing invisible illness, the financial strain, gaps in your CV due to illness, and the role of insurance companies. Rosemary Akeya, the founder of HRM Connections, shared with us her knowledge and practical tips of surviving in the workplace as an endo warrior.

We have a long way to in achieving menstrual equity, but we can be the change that we desperately want to see. Let’s talk about menstrual health and shun the stigma around it.

#periodpositive

Yellow – The Colour Of Hope

I’ve always had a soft spot for yellow.

Yellow represents warmth, love, and joy. The warmth that is toasty but not too hot, and the love that you don’t have to question or second guess, it just is. The kind of joy that fills your cheeks with giggles and causes you to smile involuntarily.

Yellow is not just the colour of emojis, it is the colour of hope. Hope for Endometriosis Warriors. It is an invitation to speak. It is the essence of who we are, a symbol of the type of days we long for.

Endo Sisters East Africa have launched the Yellow Nails Movement to start the conversation about Endometriosis.

You can have your nails done at a discounted rate at one of the participating salons. These are Ashleys Coiffure and Spa (Nairobi, Nakuru and Mombasa), Urban Hair (Nairobi), Blessed Salon (Nakuru), Mitch Beauty Parlour (Nairobi), Nail Perfection (Nairobi), Grace beauty Salon (Thika), Miracle Salon (Zimmerman) and Geanna Beauty World (Kisumu).

If you’d like to have your nails done at a non-participating salons but desire an information pack within Nairobi, you can pick an Endometriosis information flyer at Cablanche Boutique in Adams Arcade and at Rimis Men’s shop at Ridgeways Mall. You can also contact Endosisters on Facebook.

Yellow is the colour of hope, joy, peace and love.

Where Dreams Fizzle And Fade~ Endo And Your Career

The sight of blood changed my mind. It wasn’t so much the sight, as it was the experience as a whole, the texture, the colour and the pain. As a little girl, I spent hours daydreaming of myself treating little children and seeing them smile again. Having been well acquainted with the pediatrician, it was only natural for me to follow in her footsteps.

My dreams trickled away, I can’t tell you the day the tap run dry, but I can tell you the days there was short supply. In all of the tales, my period is the constant. For someone who thought they could handle sick people and blood, I was awfully grossed out by my own blood, and worse still, it made me sick.

My energy was sapped, I’d writhe around in pain on the cold tiled floor and finally lie in a pool of my tears. My periods killed my dreams.

When I started working, it only got worse. The pain was disruptive and destructive. It came anytime and lasted as long as it wanted. My reproductive system dictated my lifestyle and work schedule. I had lovely employers who accommodated me and my body’s failures. My second place of work was not as flexible and the stress of the workplace took a toll on me. I cried everyday without fail, my body hurt, and my mind was never at rest, so I left. I left to rest and to start a life that could accommodate my life and my body’s quirks.

An endo-sister recently shared with me how she’d have made different choices in her career if she knew it was Endo. I completely understood where she was coming from. My endo journey has taught me that it is okay to start over, to learn a new skill, and to figure it out as you go. My greatest lesson is: It is good to plan, but when your plan is disrupted, adjust to what life hurls your way.

When It Floods – Endometriosis & Heavy Flow

Big girls wear diapers too.


My girls talk a lot about diapers, my little one is potty training herself. No, really, she woke up one day thia6 week and declared that she was a big girl who didn’t need to wear diapers.  So she graduated to knickers when we are home, this isn’t without accidents and a love-hate relationship with the potty. But, the bottom line remains, diapers are for little girls.


One of the things that I loathed about my periods was that I always received the el-nino version, complete with hail stones, also known as the clots. It was heavy, messy and destructive. It had me longing to stay indoors, to stay tucked in bed, except, it stormed in bed too, and sheets aren’t woven to absorb the red sea. 


I’ve legit thrown away some garments before. I made the grande error of washing off – more like, attempting to wash off – a blood stain with hot water. It bonded. The red carved a home in the threads and refused to leave. I’ve been terribly embarrassed by my periods. Had my self esteem plummet during my periods. I couldn’t trust my uterus not to let me down. The flow sometimes felt like a breast-milk let down, urgent, forceful and absolutely beyond my control. 


I’ve layered and improvised to try to contain the flow. I’ve set reminders to wake up and turn during the night, because the pad just wasn’t loyal. Even layering the pads was not effective in holding back the red sea.

An endo-sister recently shared with me that the one thing she wished that she knew is that adult diapers were an option. 
I never thought of them as an option, in fact, I always considered maternity pads the next best thing. I think it’s a brilliant idea. A lifesaver, and self esteem redeemer.


Big girls wear diapers too. 

Lupron and Endometriosis – What you need to know

There is no known cure for Endometriosis. In Kenya, we do not have access to excision surgery, so doctors perform ablation surgery and then prescribe drugs to suppress the symptoms of Endometriosis.

One of these drugs is Lupron, also Known as Leuprolide Acetate.

Lupron is a Gonadotropin-releasing hormone that is used to treat hormone based tumors like in breast cancer, prostate cancer, lymphoma, and certain kinds of leukemia, endometriosis and uterine fibroids.

It is also used to reduce testosterone in males, to delay puberty in transgender boys and girls till they are old enough to start hormone replacement therapy. It has been used on a trial basis to reduce urges in pedophiles and other kinds of paraphilia.

Administration

It is injected under the skin or in to the muscle.

Side effects to look out for

  • Menopausal symptoms- hot flushes/ night sweats
  • Mood swings
  • Depression
  • Headaches
  • Pain at the injection site – redness/ itching
  • High blood sugar
  • Insomnia
  • Fatigue
  • Diarrhea/ constipation/ nausea /stomach pain
  • Acne
  • Vaginal dryness/ itching/ discomfort
  • Vaginal bleeding
  • Dizziness
  • Memory problems
  • Joint pain
  • Reduces bone density

If it is inhaled it can cause breathing difficulties, asthma like symptoms and skin reactions.

What you need to remember

Lupron is a prescription only drug.

It is not a birth control method, so you can still get pregnant even if you do not get your periods.

If you have a history of osteoporosis in your family, you need to mention it to your doctor because of it’s effect on your bone density.

You need to eat foods rich in calcium and take calcium supplements.

You shouldn’t receive Lupron if:

You are pregnant or breastfeeding.

You have undiagnosed vaginal bleeding

Ongoing drug investigations

There are on-going investigations on the drug with women claiming that it causes more harm than good. You can watch the video below for more context.

https://web.facebook.com/watch/?v=298942434150564

Have you used Lupron before? What was your experience like?

Resources

www.lybrate.com/amp/medecine/lupride-1mg-injection

https://www.rxlist.com/lupron-side-effects-drug-center.htm

https://www.nwhn.org/lupron-what-does-it-do-to-womens-health/

https://youngwomenshealth.org/2014/08/01/endometriosis-leuprolide-acetate-instructions/

Hope in A World Of Endo

During a recent visit to my mum’s house I found my pelvic scans dated 9 years ago.

I froze.

One picture unearthed memories. Memories of pain, confusion and despair.
I had archived those memories, so that I could live in the present and enjoy my here and now.

Out of three ultrasounds only one showed something that helped the doctor see that the pain was not all in my head. The other two scans, were the basis of the ‘it’s all in your head’ argument. The most frustrating and infuriating words that can be said to anyone in pain. Anyone battling real, physical, and invisible pain.

During those months, I was scared, alone and in pain. Those make for a horrible combination. One that can push you to accept everything at face value. I didn’t know about the endometriosis resource centers or support groups. My sleuthing skills were in too much pain to be bothered to do more research on the drugs being administered.

image: art by carrie joy

When the side effects came, I wasn’t sure which evil was worse, the one I had lived with for years or the one that I had willingly had pushed in to my glute. It was a literal pain in my butt. And some of its effects have stuck with me like glue. Nine years later it is hard to shake ‘em off.

I wish I knew what I know now about Lupron. I wish I knew that after sending aunt flo on vacation, it would erode my bone density; that it would sink me into a hole, that it would announce free room and board for every calorie looking for a home. That it would take over 5 years to lose that weight. That the sadness would overwhelm me. That I would experience menopause symptoms as a teen.

Just maybe, maybe if I knew all this, I would have made a more informed decision. I would have taken my calcium supplements, I would have sought help and not drowned in tubs of ice cream.

Information is power. Endo sucks! But it would sure be nice to know exactly what else you could be signing up for when you take a drug. I’ll be highlighting the drugs available in Kenya, and giving you the pros and cons of each.

Finally, we need excision surgery in Kenya. That is what hope in the dark world of endo looks like, excision. And healing, by God’s grace.

More colour, Less Gray

Happy new year!

I hope you had a lovely festive season.

For a long time I was indifferent to new years, the only new thing that it came with was an opportunity for me to wail in pain. In fact, a few years back I was convinced that the older I got the more excruciating the pain became. I longed to find the pause button in life, so that I could sift out the things that I loved and dwell on them.

Pain has a way of changing your life, it shifts your priorities and erases the rainbow in the sky. Both your happy and sad moments are processed through a gray-scale filter.

I still haven’t found the pause button but I have accepted that each year has it’s own beauty that I can dwell on. I am learning to live each day at a time and to remain grateful. Gratitude can illuminate the darkest of paths.

The truth is we don’t know what 2019 will hold, (I am not here to tell you that 2019 is your year…) but we know who holds it. While some curve balls may roll in our direction, I pray that we will experience the grace, peace, strength, joy and love that come from above. And that despite the pain, the rainbows will remain.

Here’s to 2019. A year of living life and finding joy in the little things.

3 Things to Consider this Festive Season

It is that week that temptation is everywhere we turn. The festive season is like a festival of temptation, the foods especially that you have been trying to steer clear from all year may be calling your name from the roof tops, yes, even that name that your friends do not know.

Before you say yes, remember that January is coming, and Aunt Flo is prepping her bag to cross over into 2019. With that in mind, we need to be careful. We know her ways, how easily upset she is, the tsunami-like tantrums she throws when things do not go her way.

Here are three things that I am taking into consideration as I celebrate Christmas this year.

Everything in moderation

A cheat-meal once in a while may not do much harm, depending on what the contents of the meal are. It is important to know your triggers, and try to avoid them. For the foods that cause minimal discomfort, remember to eat them in moderation. Don’t let the cheat meal become a week of lies that you will be paying for dearly in January.

Manage your energy

Christmas can be everything but relaxing, with the buzz of activity during the festive season, the people who want to see you and meals that need to be shared. As the carols fill the air, FOMO (Fear Of Missing Out) is laced between the lines of invitation texts.  The truth is that you will still survive if you do not do everything or say ‘yes’ to every offer. Conserve your energy and take time to rest. Do something that refreshes you and fills your cup.

Love on yourself

Take time out and think about all the wonderful things that have happened this year. Reward yourself for your wins, forgive yourself for the way that you feel like you have failed. Open a new page and give yourself a chance to dream again.

Allow yourself to dream, rest and believe as you prepare for 2019.

Merry Christmas!